Dementia in Adults with Down Syndrome Causing Caregiver Crisis

Caregivers form support group. ‘The medical profession, even now, isn’t helpful,’ said one organizer of the group

Craig Cambeis is losing words and memories by the day. The 59-year-old, who has Down syndrome, has been diagnosed with dementia. For his sister Adele Barlow, who is his sole caregiver, making sure they share meaningful moments, even as Craig becomes a stranger to the present, is part of the daily struggle.

During the mid-1960s, the average life expectancy for a person born with Down syndrome was about 21 years. Today, life expectancy has tripled, according to the National Institutes of Health, with many living much longer. But so too, has the prevalence of dementia increased. Research from the NIH shows that up to 55 percent of adults with Down syndrome aged 40- to 49-years-old will be clinically diagnosed with dementia.

“The reason there’s such a high correlation of the dementia in this population is the amyloid plaque that causes dementia is on the 21st chromosome in all of us. So, you and I have two chromosomes, but they have three, so that’s why it starts so early with them,” said nurse practitioner Leone Murphy.

“What has not been understood is what happens to those who age with Down syndrome,” said Jane Boyle, a member of the National Task Group on Intellectual Disabilities and Dementia.

Boyle and Murphy, who organized the first-ever statewide support meeting for caregivers of those with Down syndrome and dementia, created the group hoping to share what they’ve learned.

“The focus has been on the younger people who are coming out of high school and transitioning into society and living independently, and that’s great because that wasn’t available when Craig got out of high school — all important,” Barlow said. “But now we have this whole new generation…that’s aging, and it didn’t happen before. Down syndrome people didn’t live as long as they’re living now so maybe this is new. The medical profession, even now, isn’t helpful. I feel like I’m very much on my own to figure out what’s going on, read what I can.”